Going Very Pale

[fritzicurls]

I am very new to the idea of celiacs. Actually I found it in a book after looking for the umpteenth time to try to find out what was wrong with me. I have a long list of problems I now realize are probably mostly related to celiacs. I have many of the typical symptoms related to gastro problems, but also epilepsy and low blood flow to the brain. The anxiety connected to eiplepsy (or perhaps the celiacs) often make me frantic with worry about my health. One symptom I don't see others talkking about is all of the sudden going very pale in the face. It seems to happen randomly although I am wondering as I become proffecient at going gluten-free, it will not appear so random. I often feel slight nausea or gravelly stomach connected with it. I also had a couple of bouts of vertigo recently that I was told are connected to a viral infection. I am still having slight trouble with feeling imbalanced. Does this sound familiar to others with celiacs?

And one last thing. I am 53. I would love to hear from "older" recovering celiacs to let me know you can still accomplish feelings of health and well-being even after years of what I now know is celiacs.

[julie5914]

Hey there, I have not been diagnosed as celiac, but I have been quite anemic, which is the first thing I think of when you mention dizziness and paleness. Have you had your blood count checked by a doc recently? Really, you could even just go try and give blood to find out. Worse thing that could happen is you end up giving a pint and saving some lives.

Anemia is also related to celiac, so it may help you in building a case for your doc that something is wrong and it might be celiac.

[KaitiUSA]

I have been diagnosed with celiac for 1 year and about 4 months(since January 2004)There are over 200 symptoms with celiac disease. I had nausea, anxiety, and weight loss..they were the main ones.

The symptoms of what you are describing are symptoms. I did go pale for a little bit but that wasn't too bad for me but that can happen. I would get tested for celiac as well as for the celiac gene. These are what you should be tested for:

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

[mvick]

Hi, I'm 54 and was diagnosed at 52 on Friday of Memorial Day weekend 2003. I had your symptoms---any many more. I had made numerous trips to the emergency room and know I have a really good heart because I got every test imaginable for heart disease--but no diagnosis until I had the 4th endoscopy.

To be real honest, I didn't believe taking wheat out of my diet would do anything for me---I had horrible anxiety attacks, felt dizzy and light headed most of the time (from the anemia per the "blood doctor") suffered racing heart, high blood pressure and the feeling of "worms" crawling in my chest (probably the villi dying). You know what--after 2 weeks I felt better than I had felt in 10 years and after 6 months, I no longer had anxiety attacks or chest pains. My blood count went up and I could walk up hill for more than 2 minutes without having to rest. I got my life back---going without wheat is a small price to pay for good health.

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Concentrate on what you can eat instead of what you can't. Get some gluten free cook books. Get a mixmaster---great for making bread and other goodies. Consider it your second "childhood" where you have to learn all over again what is good for you. My husband and son love my gluten free pizza--Get Betty Hagaman's cook books. Bread, cookies, doughnuts, casseroles, white sauce recipes and so much more. Maybe you don't know anyone that's had cancer or died from cancer---but it's hit my family pretty hard---so learning to live without gluten and wheat, rye and barley is a whole lot better than undergoing radiation or chemotherapy which may not work. Gluten avoidance does work and once your feel healthy again, you'll be thankful everyday that it's so eacy to heal yourself.

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Yes, I miss lasagna and spagetti and meatballs, but corn pasta is pretty good. And rice noodles are available in prepackaged instant meals from Thai Kitchens. Don't be imtimiated by this challenge--be thankful the Lord gave you such a small manageable one.

Take care, Mary

[mvick]

Whoops I'm new at this and posted twice. I'll do better next time.

[fritzicurls]

Thank you so much for your replies. It really helps to be able to dialogue with folks who "have been there." I am more than willing to take on the challenge of going gluten free. I have been gluten free for a few days and can see some small changes. I also have a yeast infection at the moment which I am beginning to understand is part of the territory.

mvick, I so appreciate your reply. I don't feel the least bit intimidated by going gluten free. I feel relieved to finally after so many years of so many doctors to have a diagnosis that makes sense. And a road map of what to do to take charge of symptoms. For so long we have tried one thing and then another, by guess and by golly and could never see that anything worked for very long. I particulary appreciated your comments about anxiety. Because of the epilepsy I can't take an antianxiety medication (that is not addictive) without going on an anticonvulsant. All the anticonvulsants that I have tried made me so sick. So I have been gutting it out with the anxiety. I was getting so desperate that I was going to try one more time with the anticonvulsants but was so dreading it. The sickest time of my life was the eight months I was on anticonvulsants. I slept through a lot of it except for the time I was dragging myself to work. I am looking forward to being less anxious. Thanks so much for sharing that.

I am also angry at docs. I did not start having seizures until I was 38. From the literature I have read on celiacs there is a strong correlation between epilepsy and celiacs and there is a chance that if I had gone gluten free after my first seizure that I would not have developed epilepsy. I am lucky that I don't have that many seizures, so I am hoping that gluten free will also have a beneficial impact on my seizure disorder. I have been all over the country to try to address my seizure disorder - to some biggety big epilepsy treatment places and not one doc mentioned celiacs. I try to remember that they are human too. And make mistakes just like me. But Grrrr.

But onward and upward. I am looking forward to feeling better. Oh yes, on the anemia, I just had minor surgery and the blood work-up was clear. In the last five years I have had so many blood draws trying to figure this out and not once was I anemic. So go figure.

I just got all my gluten-free herbs and supplements today so am hoping for the best. I appreciate all of your replies. It helps!!!!

fritzicurls

[ianm]

I went to dozens of doctors and not one of them ever suggested a food intolernace. They would just write me a bunch of prescriptions and hope that one of them would do the trick. It wasn't until I read the Atkins diet book that I realised what was wrong. The Atkins book has a chapter on food intolerances. doctors don't know much about celiac and don't want to because they can't write a prescription for it. you will learn more from this website than any other source.